Emirates Thalassaemia Society to mark World Thalassaemia Day

Dubai, UAE: Thalassaemia patients in the UAE are facing discrimination, say experts as the world today marks International Thalassaemia Day with the theme “Patients Rights”.

“They find it difficult to get jobs. It’s a huge social problem,” said Abdul Baset Mohammad Merdas, president of the Emirates Thalassaemia Society.

He said employers usually discriminate against people with the rare genetic disorder.

Thalassaemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin, the protein in red blood cells that carries oxygen. This results in excessive destruction of red blood cells leading to anaemia.

Dr Essam Dohair, medical consultant at the Society, said thalassaemia is a big problem because of inter-marriages between cousins. “They have to have regular blood transfusions and get rid of the [extra] iron,” he said.

The disease is not just among Emiratis but also people from the sub-continent, which make up a large part of the population here.

Screening

The consultant said the mandatory pre-marital screening among Emiratis is not working. He said couples usually get the blood tests done just a few days before the wedding and if it is found that both are carriers, the marriage is not called off. Panos Englezos, president of the Thalassaemia International Federation, said in a message that patients’ rights stem from the UN’s universal declaration in the 1940s on human rights. An article focused specifically on people’s rights to have basic needs such as adequate health, food, clothing and housing.

To create more awareness, the Emirates Society will hold a forum today where about 1,500 parents, patients, social workers in the GCC will meet. Children’s activities are also planned at the World Trade Centre, Maktoum Hall.